Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF

Posted by mmar2025 @mmar2025, Feb 7 2:21pm

Diagnosed in August 2025. Started Lanreotide injections in October. Pet Scan revealed a "Christmas tree". Tumors covering pancreas and liver. Non-functional and no further symptoms. Ki-67-16.6% (not high, not low). Well-differentiated - Grade 2/Stage 4. Genetics found an even more rare KIT Missense Variant Exon 10 GOF. Not normal in NETS. "One in a million odds??" Lanreotide not holding it back enough. 15-20% growth after third injection. Onto PRRT starting this Wednesday, February 11, 2025. It is hard to subject myself to radiation when I feel perfectly fine except for the tiredness the hormone injection is giving me. I am told there is still an approximately 30% chance PRRT won't work. Tried for clinical trial with the new Alpha, but I can't wait to see if I will be accepted and pass up trying to stave off the tumors. I keep asking myself how long will I live? There appear to be lots of side effects to PRRT, but reading material tries to minimize how bad they may be. Has anyone done a clinical trial or considered it, and the outcome and the "why nots" would be appreciated.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

mmar2025 | @mmar2025 | Feb 19 12:09pm

In reply to @tomrennie "@mmar2025 I hope you like Gatorade? I have never heard of that solution before. Let me..." + (show)

@tomrennie There is an old saying, "Katie bar the door". It took three hours, but it would be good if there are two bathrooms in your home! This is not something you do without a physician's advice. It is actually what you would do for a prep for a colonoscopy. It worked. Hope this info helps.

Turkey, Volunteer Mentor | @tomrennie | Feb 19 3:20pm

In reply to @mmar2025 "@tomrennie There is an old saying, "Katie bar the door". It took three hours, but it..." + (show)

@mmar2025 I just drink what is prescribed for the colonoscopy. I can relate to the separate bathroom and a three hour tour in it preparing for a colonoscopy though. No fun. Gilligan's three hour tour was probably more enjoyable, and he ended up ship wrecked.

mmar2025 | @mmar2025 | Feb 19 5:20pm

In reply to @tomrennie "@mmar2025 I just drink what is prescribed for the colonoscopy. I can relate to the separate..." + (show)

@tomrennie I should have done better at clarifying. It took three hours before anything happened. Then just like neuroendocrine tumor cells, it began to proliferate. Gilligan's three hour tour would have been much better.